On Sept. 30, individuals from Southern Riverside and San Diego counties will band together to raise funds and awareness for one of the most misunderstood digestive diseases affecting individuals today – Crohn’s disease.
The third annual Take Steps, Be Heard for Crohn’s and Colitis will take place from 4 to 7 p.m. at Bel Vino Winery in Temecula, and one of the walkers, Temecula resident Kristy Hickman, 22, knows firsthand how difficult living with such an ailment can be.
Having been diagnosed at the age of twelve, Hickman has had to live with a disease that has led to multiple visits to the emergency room, undergoing surgeries; experiencing unwanted side effects from medications; and dealing with pain every single day.
“It was not easy, and for so long, I felt like Crohn’s disease defined who I was, stated Hickman.
For the past two and a half years, however, Hickman has been in remission after a successful small bowel resection surgery. Combined with the proper medication, Hickman has reduced her pain level, increased her energy amounts, and is able to keep up with her three, healthy children.
Knowing firsthand what the challenges of living with a debilitating and unpredictable disease can be like, Hickman will be participating in Take Steps with the hopes that one day, “doctors will be able to tell a newly diagnosed 12-year-old…that they won’t have to suffer because there is a cure and they will lead a happy, healthy life.”
This year, Kristy Hickman has been chosen as the Honored Hero of Take Steps as she embodies the fighting spirit of those diagnosed with Crohn’s disease along with a positive and hopeful outlook on life.
“Kristy’s story is touching and a great inspiration to the Crohn’s and colitis community,” said Laura Pinner, the fundraising walk manager. “We are fortunate to have patients like Kristy who use their personal story to raise awareness about digestive diseases.”
Travis Clausnitzer, a Fallbrook resident, who has been living with the painful symptoms of Crohn’s disease for the past 11 years and only having been diagnosed three years ago, will also be participating in Take Steps with the hope to inspire others and raise awareness.
Known collectively as inflammatory bowel diseases (IBD), Crohn’s disease and ulcerative colitis are painful, medically incurable illnesses that attack the digestive system.
Crohn’s disease may attack anywhere along the digestive track, while ulcerative colitis inflames only the large intestine (colon). Symptoms may include abdominal pain, persistent diarrhea, rectal bleeding, fever, weight loss, and fatigue. Many patients require hospitalization and surgery. One in 200 people suffer from Crohn’s disease or ulcerative colitis, with as many as 150,000 under the age of 18. Most people develop the disease between the ages of 15 and 35.
Clausnitzer, 31, had difficulties because in his case the inflammation was not always apparent, despite various trips to the doctor for colonoscopies.
“When they do a colonoscopy with a camera to take pictures, there has to be an active inflammation for the doctors to realize something is wrong,” he said. “Sometimes I would have a flare, sometimes not.”
The inflammation symptoms truly began to impact Clausnitzer’s life.
“It was really embarrassing, and people don’t want to talk about it. It’s hard to deal with,” he said. “It’s really a debilitating disease that affects how you think about things. Before I was diagnosed, it would control everything. I was afraid to take trips, and would plan things around bathroom stops. My wife and I took a cruise, and I couldn’t get off at the ports.”
Trips to the doctor’s office seldom provided the help that Clausnitzer needed.
“When I would go to the doctor’s office, they would say they didn’t know what I had,” he explained. “They thought I had some kind of bug or virus that was causing the symptoms. They said certain things weren’t [the cause] because of blood tests.”
Finally, Clausnitzer found a doctor who discovered that he had multiple inflammation points in his colon.
“He said he could see my problems, but didn’t know enough about Crohn’s, and referred me to a doctor at University of California at San Diego (UCSD) that specifically deals with Crohn’s patients,” said Clausnitzer. “He steered me in the right direction.”
Despite having discovered what was causing the ailment, there is no cure that completely eradicates Crohn’s; medication can only help take care of some of the symptoms.
“It’s one of those things where you just want to achieve remission,” said Clausnitzer. “For a little while, everything will heal up, and then I will have flare ups and go backwards. It’s kind of great at times and horrible at other times.”
Currently, Clausnitzer is on a medication that he self-injects every two weeks. Prior to that, he has taken two other types of biologic medications that have not worked for him.
As the father of a 14-month-old son, Clausnitzer understands that he must be involved in raising awareness for this illness. He became involved with Take Steps and the Crohn’s and Colitis Foundation last year after his son’s birth, “in hopes that no future generations will have to suffer like [he has] from this disease.”
“I feel like a lot of people still don’t know what Crohn’s is,” he said. “It’s a personal thing, and people don’t normally talk about it. I want to share with the community to explain how it affects people; they think it’s like having diarrhea once in a while. I decided that I really needed to do something so that if my son develops Crohn’s, there is a cure.”
“[Clausnitzer’s] story is a reminder of just how critical the funds and awareness raised through Take Steps really are,” said Pinner. “Surprisingly, these diseases are not very well known, yet they take a tremendous toll on people’s lives.”
Hickman and Clausnitzer will join thousands of people this summer, at 158 walk sites across the country, to join the fight against Crohn’s disease and ulcerative colitis.
Celebrating its fifth anniversary, Take Steps has raised over $30 million for research and patient support services. Their goal is even more ambitious for 2012. They are committed to transforming the lives of those impacted by these diseases and leading them to a brighter future through well-funded, cutting-edge scientific research.
To take part in helping raise awareness about Crohn’s disease or colitis, register to walk with Take Steps Temecula at www.cctakesteps.org/temecula. For more information on Crohn’s or colitis, visit the Crohn’s & Colitis Foundation of America website at www.ccfa.org, or call (888) 694-8872.
To comment on this story online, visit www.myvalleynews.com.